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Global HIV Activism
- 2. Ryan White Teen from Indiana who contracted HIV from infected blood products taken to treat hemophilia He was expelled from school and his house was threatened with gun shots His activism in fighting stigma and educating the public resulted in the passing of The Ryan White Care Act
- 3. Gugu Dlamini a volunteer field worker, went public with her diagnosis Her neighbors accused her of bringing shame to her community with going public a mob attacked her house and stoned her, kicked her and beat her with sticks. She died the next day. https://www.youtube.com/watch?v=STnIv1qVeeE&t=11s
- 4. Jyoti Dhawale Indian activist living with HIV Contracted HIV due to medical negligence Works with PLWHA, the LGBT movement in India, and The Stigma Project; advocates for rights of people with HIV/AIDS https://youtu.be/HxXXLyRPPZk
- 5. Wan Yanhai Activist for people living with HIV who has fled China due to pressures from the Chinese government Discovered Bloodhead Scandal in Henan Province Founder of Aizhixing Institute to raise awareness and fight discrimination and Beijing LGBT Center, the first in China
- 6. Reframing Our Activism - “Helping, Fixing, or Serving” - Rachel Naomi Remen HELPING FIXING SERVING ● Power dynamics ○ “Strong vs. weak” ● Can cause more harm to development ● Sense of satisfaction ● Inherent judgement ● Assumption that life is “broken” ● Respond with expertise, not humanity ● Can add stigma ● Equal relationship ● Collaboration ● Honoring other perspectives and understanding own limitations
- 7. HOW CAN WE SERVE BETTER?
Editor's Notes
- Talk about focus on AIDS activism in the US, but there is ongoing activism now in various places in the world
- In late 1990, the U.S. Congress passed the Ryan White Care Act, the foremost piece of HIV health care legislation in the United States, providing for outpatient and home health care, nutrition therapy, hospice services, drug payment assistance, dental services, and health insurance help for people living with low socio-economic status.
- Husband forced her to have 3 abortions because did not want family, about to have 4th abortion when she found out she had contracted HIV Got HIV from doctor living with HIV who did her abortions, had a cut on his finger and his blood transmitted HIV to her she continues to advocate for people who are uninformed/stigmatized in India In India there exist gender-specific disparities in HIV prevention and treatment. One of the main factors influencing India's HIV epidemic is a high rate of gender stratification, in which women experience extreme social disadvantage (Bloom & Griffiths, 2007). Indian women suffer disproportionate vulnerability to HIV/AIDS (Kambou, Magur, Hora, & Mukherjee, 2007), often because they often lack HIV awareness, live in conditions of poverty, and experience gender inequity (Van Rompay et al., 2008). WLA have been found to have low levels of psychosocial well-being (Solomon et al., 2008), which is confounded by the fact that many women live in rural areas and are socially and physically distant from help and government resources (NFHS, 2008).
- Discovered coverup of blood selling businesses connected to local officials infected tens of thousands (as many as a million) men, women, and children with the HIV virus. frank and aggressive" approach toward HIV has led to frequent run-ins with authorities and landed him in detention three times in the past 12 years, including a month-long detention in 2002 that made international headlines and sparked a successful international campaign for his release. he praised the government for strides it made on the issue in recent years – such as increasing funding and attempting to address the stigma of having the virus in China – the authorities were less tolerant of his work on sensitive issues, such as highlighting the cases of those who contracted HIV from blood transfusions. NGOs have been more successful and more vocal … [The authorities] maybe want to put a lid on their development – not cracking down completely because that is impossible, but maybe picking the most outspoken ones to send a message to the rest,"
- Serve, help, fix: we want to serve, but it can come off as help or fix Help: power dynamics, inherent inequality in the word, it can take away from the people, life is “weak” Social structures, history Fix: inherent judgement, assumption that life is “broken”, response with expertise, adds stigma by implying people living with HIV are “broken”/something is wrong with them - in reality not true Serve: equal relationship, honoring their perspective/knowledge while introducing them to new ideas, exploring limitations - COLLABORATION “Help” - life is weak, “fix” - life is broken, “serve” - life is whole What is professional is not always what best serves/strengthens others’ wholeness fixing /helping creates distance, serving cannot happen at a distance, must be connected Life is not broken but “holy” Service Life is sacred, we are all connected Serve from all our experiences, aware of wholeness in ourselves and others/its power, our limitations also serve Strengthens us and others, equal relationship Renewing, sense of gratitude Respond and collaborate with the wholeness of others, strengthen it and they can see it as well (not being condescending, having respect for others) Humanity is more important than expertise Service heals “Serving is responding to a problem and collaborating with others to find the solution. You honor the perspective and knowledge of the people you are serving and then seek to open their eyes to new possibilities and ideas. You give information they are lacking and ask questions to make them think more fully about the situation. You explore possible consequences of their ideas. When they come up with plans for action, you ask them what particular support they need from you to be successful” Help (focus on power dynamics) Not a relationship between equals, people feel the inequality (power dynamics) We take away from people (self-esteem, worth, integrity, wholeness) Aware of own strength Draining, sense of satisfaction Fix Draining People are broken, respond to this with expertise but do not see wholeness of person/trust integrity of their lives Form of judgement Adds stigma
- Acknowledging our privileges Keep stuff cause-centric